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  #1  
Old 12-03-2010, 12:52 PM
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jasonhhh jasonhhh is offline
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Default feedback needed on best places for multi level adr surgery

im a 29 male had severe urinary urgency and erectile dysfunction and bad back for the last few years already had a discectomy a year ago with some releif im looking for feedback on stenium hospital and dr bertagnoli in germany or of any other dr that does multi level adr i need l4/l5 l5/s1 replaced just want to make sure i get the right doctor please anybody who is or had surgery by theses places or any other will be greatly appreaciated just dont want to get butchared by a bad dr thanks
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  #2  
Old 12-03-2010, 07:11 PM
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Spend some time (a few weeks at the very least) doing some serious reading on this and other sites specifically on these doctors, facility reputation, procedures and their risks/complications/contraindications/ alternatives, etc. There is so much to learn, and I didn't have this knowledge talking to my US doctor. It is essential if choosing a physician oversees. There are positives and negative stories associated with many of them. You will learn a lot by reading people's stories and the details of their experience. I am in a similar boat, but am a few weeks ahead having learned much in the last few weeks about choosing procedure options and the physicians who perform them by asking intelligent questions that pertain to my medical reports. Don't go too quickly, without a lot of reading, as there isn't anyone truly looking out for you but you! Understand your medical reports and get them ready to send oversees on CDs. Make copies for yourself. Start a file. Start a list of questions related to your condition.

I just sent my medical reports this week to Dr Bertagnoli - Germany (my local ortho surgeon brought up his name with high recommendations - although I hear he's expensive in comparison to others), Dr Clavel - Barcelona (have read positive things about him on this website), Dr. Boeree - UK (positive comments and the chance to speak to him personally by phone to review your reports, which is as close to a face to face as you can get. Plan to talk to him first to know what to question the others on via email), and Dr Pimenta - Brazil (good comments here and seems to favor less invasive procedures and more alternatives rather than just ADR). I chose these doctors specifically from stories that seemed positive and similar to my problems. I don't know if I'll have enough info (or money!)to make a commitment to any of them, but it's enough to start the ball rolling.

Good luck and be smart in your pursuit. I hope you get your problems resolved. Too young to feel like that!
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Joey Sue - 50 years old
9/28/2011: Hybrid STALIF TT interbody fusion at L5-S1 and M6-L ADR L4-5 with Nick Boeree, UK - forever grateful to you Nick! Still doing great.
Prior to the fix: Severe DDD L4-5 and L5-S1 with moderate facet degen at L5-S1, but only mild facet degeneration at L4-5.
http://healthyback2011.blogspot.com/
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  #3  
Old 12-03-2010, 08:51 PM
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Joey Sue, that's good advice -- thx for posting.

Jason, I would stay away from Stenum for lots of different reasons! Here are two (the first topic is composed of many past topics), the last one explains their unethical marketing which forced me to hire a lawyer (which I paid out of pocket):

http://www.adrsupport.org/forums/f49...utation-10308/

http://www.adrsupport.org/forums/f51...ngement-10330/

Also, a "hybrid" procedure may also be another option more attainable in the states, it means a combination of fusion and an artificial disc replacement. Do some searching within this community, there's over six years of post-operative experiences here. Use the search function, there's an advanced utility too.

I hope this helps get you started...
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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  #4  
Old 12-04-2010, 08:40 AM
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Then again there are several hundred Americans that have had tremendous successes at Stenum.

I can be counted as one of those. 20 months after my surgery, I am pain free from lumbar issues and able to perform as I did before the spine issues disrupted my life.

I'll be happy to provide you with several other patients that will give you similar feedback.

If presented with the same spinal issues today, I wouldn't hesitate to make the same choice. If my wife's cervical problems deteriorate further, she has no hesitation in opting for Stenum either.

It's a shame the sport of Stenum bashing continues on this and other sites. I'd be interested to find out how many of these stories are generated as retribution from the same spine broker that was denied employment or commissions from Stenum.

Bob
__________________
04/06 L5/S1 Rupture
05/06 MRI shows DDD @ L2-S1
06/06 Diskectomy/ Laminotomy L5/S1
04/07 Recurrent Disc L5/S1
4 Ortho and 1 Neuro Surgeon, 5 MRIs, 1 EGM, 1 Myleogram & 11 EDIs later:
03/27/09 L4/5 & L5/S1 Maverick disc at Stenum
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  #5  
Old 12-04-2010, 08:43 AM
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Jason,

That's terrible to have those kinds of problems at 29! I hope that we can be helpful here. You've already received some very good information. I want to ditto, double ditto and triple ditto everything that Joey Sue posted, and second Harrison's concerns about Stenum. But as Bob points out, there are many hundreds of successes from Stenum; I would dare assert the overwhelming majority are successes.

Having read dozens and maybe hundreds of fusion/ADR outcomes, and having spent dozens of hours researching scores of peer reviewed research papers (for an insurance appeal), there are three surgeons that for my tastes seem to stand out (in the international arena). They are the ones that Joey Sue mentioned; Clavel, Boeree and Pimenta. All three are very conservative (unlikely to risk your long term health by performing an operation that you want but they think is unwise), extensively published (especially Pimenta), have far more ADR experience than any US surgeon, and consistently have good patient outcomes published on every forum that I've ever seen.

Dr Clavel did my two level cervical M6 ADR and I've resumed running marathons. His patients post excellent outcome after excellent outcome on the forums. I would note that every outcome I've read about has been cervical, not lumbar. I know that he performs lumbar surgeries, but don't know why only his cervical patients post on forums. If you consider him I would encourage you to look for as many lumbar outcomes as you can find.

I know of two of Dr Pimenta's patients that have very complex lumbar cases that were up walking around the day after surgery, and out touring Brazil the following week. Dr Pimenta is, I found, a highly published researcher that is profusely cited by his peers; at least as much as Dr Zigler.

Dr Boeree's patients have posted outstanding outcome after outstanding outcome on forums; cervical and lumbar. One thing that stands out about Dr Boeree is that Dr Zigler (possibly the most conservative ADR research surgeon in the world) referred a patient to him! This particular patient was very physically active until his lumbar problem. Dr Zigler told him that the ProDisc-L would not allow him to return to his active lifestyle, but that Dr Boeree and the implant that he used would. Here is a link to a blog entry from this patient about that meeting in which Dr Zigler referred him to Dr Boeree and the M6-L prosthesis.

There are a lot of outstanding ADR surgeons out there, many of which are in the US. Are you physically active? Do you have any of the contraindications to ADR? Where are you located? Someone may have experience with an ADR surgeon that is near you.

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #6  
Old 12-04-2010, 11:13 AM
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jasonhhh jasonhhh is offline
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thanks i have been researching for 2 years already had one surgery its just my symptoms arent a typical i always had back problems but it was the urinary problems that have been killing me i sent my records to dr Bertagnoli and stenium hospital in germany and was recomended 2 level adr im thinking of going with dr Bertagnoli but my only problem is the money im trying to work throug the pain and save enough because he has to be paid up front im trying to avoid a fusion being one of my friends had one and is outcome inst what i want
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  #7  
Old 12-04-2010, 11:21 AM
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jasonhhh jasonhhh is offline
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iu am located in new york all the surgeons i met with told me fusion or my back isnt causing these problems which im 99 percent shore and yes i lived a very active life until these problems started lifting weights,boxing and i do construction for a living
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  #8  
Old 12-04-2010, 12:54 PM
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Jeff, as always, that’s a helpful post. You rock.

Jason & Bob, sorry for the digression, but this statement from Bob merits a response:

It's a shame the sport of Stenum bashing continues on this and other sites. I'd be interested to find out how many of these stories are generated as retribution from the same spine broker that was denied employment or commissions from Stenum.

As you know, I am happy that many people like you are better after having surgery at Stenum. But it is the ONLY institution I will advise patients to stay away from for a LONG list of reasons. These reasons are factual; financial, legal and practical. The many links I provided are from patients whose lives were ruined by surgeries – the patient that created the stenumnightmare.com site is a good example.

Of course, I am additionally biased since I had to spend my own money to hire a legal firm to send a cease and desist to their German hospital and their sales operations in the US. Did everyone read how Stenum hijacked my ADRSupport site? This is incredible and it still makes me angry:

http://www.adrsupport.org/forums/f51...ngement-10330/

Will the Stenum fan club reimburse me for the legal fees? Will Stenum?

And I am very happy to have no dealings whatsoever with the brokers you mention – both were banned from this site. One still has a video of me on his site; he ignored our cease & desist statement to remove it. Another person I banned started an organization and copied this community and non-profit idea almost exactly.

The important thing is that this community now has a peaceful, honest and credible foundation that has served the public transparently for six years. The culture and institutional memory now represents a helpful database for patients near and far! And we are just getting started…

Jason, we can talk soon. Sorry for the detour.
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #9  
Old 12-04-2010, 02:09 PM
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jss jss is offline
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Quote:
Originally Posted by jasonhhh View Post
iu am located in new york all the surgeons i met with told me fusion or my back isnt causing these problems...
Jason,

I have no first hand knowledge of Dr Bitan, but know that he is in your neck of the woods (NY, NY), is a renowned ADR surgeon, and that I have never seen an ill word spoken of him.

You've seen multiple surgeons? Did they prescribe fusion because they did not do ADR? Because they contraindicated you for ADR? I have seen a number of patients go to Stenum and Bertagnoli after US surgeons contraindicated ADR. About half ended up very sorry that they went against those contraindications. So if you have been contraindicated for ADR, I would encourage you to be very very sure before going through with ADR anyway.

I've also seen people go into ADR surgery and come out no better than they went in, because as it turned out, that the diseased disc, though degenerated, was not what was causing the problem. There in lies the rub; we have different doctors giving us different diagnoses, none of us have medical degrees, but yet still have to make the decision on what treatment we're going to pursue... There are many tests that can be done to accurately determine what is causing your symptoms. Before proceeding with ADR, or any other surgery, I'd strongly encourage you to determine beyond doubt (if possible) what is the cause of your symptoms.

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #10  
Old 12-04-2010, 04:01 PM
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Harrison Harrison is offline
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Well said, Jeff. Jason, if you've not already read this multi-page post on contraindications, pls do:

http://www.adrsupport.org/forums/f51...ications-9620/

One word of caution for anyone tempted to make conclusions about surgical outcomes though, pls see this sticky:

http://www.adrsupport.org/forums/f44...on-board-8467/

It's very difficult to accurately assess outcomes, that's why I implemented the outcome survey. More on that next month.
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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